Friday, August 9, 2013

Crohn's and Colitis Picture Project

Take a moment to stop by www.cdpictureproject.com
But first below........
This is a must read and I guarantee you will be glad you took the time to do so.
 
How many people ( including family and friends) that you know have no idea what you "really" deal with on a daily basis? I bet you look great most times on the outside and put on a happy face.  Because of this, no one, except other Crohn's and Colitis patients understand.
 
Did you have a surgery (surgeries) that is not visible?  Answer probably YES
Do you hide your scars? Probably YES
Do you sometimes wish you could just show people your surgical victory scars?
Are you embarrassed to show people?
 
When in the hospital have you had to measure your bodily functions every time you go to the bathroom? Often times I wanted to take a picture so even my immediate family understood how inconvenienced I am.
 
How about the NG tube, IV's, machines, oxygen, picc lines; etc? 
 
It's time to put a face and a body to this horrible life long illness.
 
I thought about breast cancer survivors, heart patients, kidney dialysis patients, 
diabetics and other illnesses and how they potentially can carry on with their lives after a surgery.  They can participate in Relay for Life and other related type walks and fundraisers.  There are several such walks and fundraisers for Crohn's and Colitis but how many of us can really participate?  If we are in remission we sometimes don't want to even think about CD or Colitis for as long as we can until the next flare!  No wonder our funding isn't what it should be.
 
The TV commercials show people looking for restrooms, drugs such as Humira and Remicade.  I believe anyone not familiar with the disease thinks we just need to go to the bathroom a lot.  Whoopie, what's so bad about that?
Do you think a commercial is not enough?  I certainly do.
 
My mission is to document stories and pictures of our scars, medications, TPN, infusions, and what people "don't see".  The impact will turn heads.
I know I'm on the right track.  So many people have submitted head shots and body shots.  I have a hard time looking at them and get upset at the enormous amount of people dealing with the impact of CD/ IBD.
 
I for one do not what anyone to see my body deformations.  I bet you feel the same way.  I have an ostomy and it can be quite disturbing to those not familiar with one.
 
So, I have found a way to anonymously compile many pictures.   I don't care who they belong to, only that I receive them.  Many people want to allow their names to be displayed so I created a "Featured Story Page".  That's fine but definitely not 
necessary.
 
What will I do with all these pictures and documentations?  Glad you asked.
 
I will spend the next year or two, organizing and collecting all I can of our behind the scenes lives.  Next I will put it into manuscript form or book to present to legislative branches of health for each state. This manuscript (book) will be useful for doctors, GI students and advocates.   It will be a big project but I figure, I can't work and why not spend my time helping myself and others find a cure.  The first step is to show the need.  Talking and reading about it just isn't going to cut it.  I think we need IMPACT.  Raise eyebrows, hear a few, wows, I didn't know it was that bad!  I am a web designer so I can easily keep the project visible.
 
I went through the trouble of providing a picture uploader on the site.  I even have a sample of what comes through to cdpictureproject@gmail.com.  It show only a file number, no names (unless you want to share), just pictures and documents.
If you take a picture of your entire self, I will crop only the mid section of your body image so there's no need to go through much trouble on your end.
 
Like I said, there a many who wish to reveal their identities because they are advocates for the disease.  They feel as I do.  Not enough is being done.
 
Please help us help you and contribute in any way you can.  I am seeking out professionals with the illness such as lawyers, doctors and others.  We know this illness does not discriminate.  We've seen celebrities come forward.  They can only do so much and they certainly don't want to tarnish their image by really "putting it out there".  Another reason we need pictures.
 
Remember, everything is 100% anonymous, private and will not be shared publicly or without your written permission. The website is in its infancy so please excuse the simplicity at this time.  It will evolve into something amazing.
 
If you have a google email, please add me to your circle or request I add you.  I will keep you informed as we progress. I can also share from google drive what you might need to help assist.
 
I of course would love any help or input.  I know you are out there with talents I could absolutely utilize.  I am looking for CD Picture Project representatives in each state.  I am in Florida to get the ball rolling.  I do not think I can afford to represent to each state physically at Board of Health meetings at this time.  In the future I will travel but am relying on participation from anyone who can give a few hours a month.
 
Finally, the website address iswww.CDPictureProject.com
 
Go there asap, tell your Facebook Support Pages to participate.  Get the word out.
I am also working on a page right now to list every support page I can find.  If you have a url address please forward to me.  If you need my direct phone number, please email me.  I do respond much quicker by email however.
 
Thank you in advance, we are gonna make this happen!
Have a fabulous day, keep the faith and keep smiling.
Anna Marie
 


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